@RedRose Condolences for your nails. I can see how you'd want those hanging on by (less than) a nail to fall off so that you can get the new nails growing and some relief from the discomfort. And such nice news that you'll have a break for Christmas, and that you're starting to get a little fuzz. Eyelashes surely must not be far behind. New normal, here we come.
@cdc Here's to ringing the bell today. (Though I know you'll be chatting with your oncologist next week and might sneak some more paclitaxel in, I say celebrate today and then again later, if you get some more cycles in.)
I'll have a look at that Georgie, thought not sure its a bit too late for some of them. You do seem to be collecting referrals don't you. Hope they get that sorted for you and also probably a good idea to wait to start Rads once you are feeling a bit stronger, you have had a rough time of late.
I know I only had a little 75% dose of T but I used polybalm, which my consultant recommended and trialled at my hospital. I had to coat finger and toe nails 3 times a day, and massage in, and mine are fine, so much so that I would recommend it fully. It was expensive but worth it, and I have noticed that my nails feel stronger. I think you can also use it after chemo. Reddi, did you go ahead with this?
Link into polybalm: www.polybalm.com
I start rads on 10th December. I was supposed to start at the end of November, but I asked for it to be delayed so that I could recover more from the side effects, including the blood clot on my lung and the 3 bouts of sepsis. I'm still breathless and coughing a lot.
My breast care nurses are amazing! They saw me yesterday and helped me get in touch with my oncologist, and I also had them look at my boobs as the affected side is still so swollen. They also arranged a scan, and found that the swelling isn't a seroma, and they have referred me to lymphoedema nurses to check out.
Ah well, another referral!.... anyone would think I am trying to 'collect' referrals! 😩
Bye for now
Thanks Reddi, I'll invest in some, they look like they are going to dry up completely and fall off! EEK
@Kip I am sure you've already got this lined up, but just in case: get some cuticle oil -- OPI makes a version that brushes on, and Boots has a drop applicator version -- and apply it 2-3 times a day. That should help with the dryness and flaking. (I ended up taking off my nail varnish midway through first T cycle and doing intense moisturizing instead as I had dry nails before chemo and worried about not being able to treat the nails themselves.)
HI CDC - wow to have the last chemo will be great, I know its not the full amount you were initially set to have but the equivalent to 3 docetaxols seems to be the standard doesn't it, thats what I've had. It will be a relief for you to get to the end of that and let your body get some normality back. I've found the se's after finishing chemo are fading, just the aches still and the nasty looking nails, apart from that feeling ok, except the naff armpit which is still stiff and tender and numb.
Sally - shame about the trial, but I guess better to be safe than sorry if it turns out you can't do it. How do you feel about having more Rads if they suggest it?
I've now had 2 tamoxifen and so far ok, awake again in the night, but I think that is just me nowadays, I was constantly waking up hot before I started them so nothing new there... I am sure it will be like chemo and cummulative but fingers crossed it stays ok.
Sorry I knew it was you with the eye problems- forget to put your name before that sentence. I do hope the painkillers and steroids help.
Had a hectic day so will post properly later but it looks like tomorrow may be my last chemo! Oncologist didn’t really want me to go ahead due to the neuropathy but I’ve asked to have one more (should have another 4). I figure if I can do tomorrow I’ve had the equivalent of 3 docetaxel which is what many seem to have had, I’ll have a review in a week for the final decision.
Have a a good evening everyone. X
oh dear Reddi sorry to hear you have shingles to add to everything else. My Husband had it and its not nice. Hope you don't suffer too much and that the chemo can go ahead or not if thats what you would prefer.
Sally - I do sympathise with the hair loss, I read all the side effects on the Tamoxifen leaflet and one of those is hair thinning and am hoping this doesn't happen, am only just getting used to my silver skinhead! You did so well with the ice cap too.
CDC I took my first Tamoxifen last night before bed, thought I'd start with nighttimes and see what happens. So far so good, I was able to get to sleep but did wake in the night, although I have been doing this for some months now, had a hot flush, but no worse than those I was already getting and I still have the aches and pains in joints and back from the hateful Docetaxol. So far today feeling fine.. but having only had one I am sure there is more laying in wait for me. At the moment the aches and pains are the problem for me and the fact I think I have developed cording under my arm, although the seroma is almost gone. Just seems you get over one thing only to have something else crop up. When will get a break??? Now feeling like a 90 year old when I bend or get up and finding walking painful sometimes.... whatever next.
@cdc Throbbing eye pain is me! (Sally has it hard enough as is.) Pain is only occasionally severe, typically when I get a streak of it across my scalp (nicely following a line of little sores, I discovered when mapping it for my OH, which kinda seals the diagnosis). The eye forehead / above eye area is more mild to moderate pain. I can take painkillers (carefully); today's steroids for chemo should also help, as will the antivirals, which should stop it from spreading.
I knew the chicken pox virus could be reactivated by stress, as my sister had shingles last year. And I've had a stressful couple of weeks. But I hadn't considered *why* stress is the trigger; I now know that the immune system generally keeps the remaining virus in check, but during periods of stress, it may not be up to the job. And people who have a compromised immune system -- HIV, bone marrow transplant, chemotherapy -- are of course then at risk for it, too.
Sally it really does seem so unfair you are now getting so many side effects. I’ve also heard of some people being pur on the same drug but from a different the manufacturer and faring better. There must be an alternative.. The throbbing eye pain sounds particularly grim. Hope your meeting with the ophthalmologist is helpful
Reddi I’m so sorry to hear about the shingles -my father in law has it too. He has multiple myeloma but a stern cell transplant was very successful. He did have to have chemotherapy beforehand however, and he has struggled with the pain from the shingles ever since. Is it related to having cancer treatment? Is there anything that can help. Relieve the symptoms? Hope your chemo goes ahead on a Friday. Can’t believe it’s your last one!
I’ve got my transfer meeting with the Marsden on the 26th. Wondering if they’ll say I can stop the chemo as I will have two more Paclitaxel under my belt (, albeit at a reduced dose) which will be the equivalent of me having had 3 docetaxol.
Kip how are you doing after taking your first tamoxifen, I’ve seen there is a whole forum on here for hormone therapy,
Take Care everyone x
Quite a few of the symptoms overlap with chemo side-effects, and my pain level isn't too bad, thankfully. But I think I'll need to visit the ophthalmologist tomorrow so that they can check out my cornea, as the throbbing is getting a tad too persistent.
@Sally -- That is so upsetting. Worth noting that I am sure I have read on another thread that some people have trouble with letrozole and have been switched to one of the other two AIs and fared much better. (And some do well in letrozole, and don't do well on another.) So do report your symptoms -- especially lack of appetite -- to your team and see if they might want you to switch sooner rather than later. (There might be a "breaking in" process, of course, where they want you to stick with it for a few weeks before trying something else.)
In personal news: just in time for cycle 7 -- last hurrah! -- it seems I've got shingles. I just thought I had a rash on my forehead, some eyebrow acne from hair regrowth, and a sty on my eyelid from lash regrowth. The pain and weird tingling should have been a clue. Now on antivirals and curious to see if Friday's chemo will be the full cocktail or if I'll only be given my HER2 infusions and skip the docetaxel (an option thrown out by the oncologist this morning). My body does not like this stuff.
Oh Sally how unfair about the hair, is it caused by the medication? I just picked up my tamoxifen and bit worried about taking it but needs must. Big hugs to you. Xxx
Oh Sally, I'm so sorry, I'd want to cry too, after you'd done so well with your hair through chemo. Have you spoken to a BCN at all? Hugs
I've just started taking Anastrozole and I'm fearful of thinning hair from it. Like you I've already gone from long thick hair to short and the thought of it not growing back properly is almost too much to bear.
Thanks CDC, I think i am going to try for nightime first off, if thats a problem I'll switch to morning, its got to be taken whatever so sleeping through it might be the best. Seems crazy to be worrying so much about a pill when we've had chemo, operations etc doesn't it.
Sally - What a mare! How on earth does this sort of thing happen... keep on at them!!
Aaaagh! Makes my blood boil Sally. It’s so unfair that you’re having to go to the effort of detailing all the inaccuracies and misinformation, Surely the whole point of the investigation was to work out what exactly had gone wrong, issue a fulsome apology and explain how they’d prevent anyone else going through what you’ve had to. I hope you can get some proper answers soon. Xx
Hello, just back from Rads planning session. All painless, tattoos in place and only took about 10 minutes. I saw a lovely nurse and when I burst into tears (been very emotional recently) she was very kind and talked me through my diagnosis and treatment adn explained its all normal to feel this way at Rads as its another treatment but also the light at the end of the tunnel. They got me to fill out a form to say how I was feeling and will offer me some therapies and counselling should I want it. Annoyingly before I could start the planning scan she said they hadn't got my results from the ANC (panic moment as thought I had been given someone elses last week) so she had to see the ONC as they had written I needed Rads to middle of chest. ONC told her the nodes were clear so I don't need the rads to the middle of the chest after all! Good job she checked. Wish they would talk to each other. Now going to start Rads on 29th November for 3 weeks. Still haven't got the Tamoxifen as the GP hasn't sorted it yet. I hope I do as well as your Mum does CDC, can't decide whether to take them last think at night or first thing in morning?
Hi Ladies, sorry for not replying over the weekend, had Mum to stay as OH and step dad took a boys holiday for the weekend. Been very busy.
Georgia Gee - hmm your seroma problems sound like mine, I am getting movement back in arm and the seroma is definately going down but its still there and tight around the joining bit from armpit to breast (or what was my breast). Its not painful but tight and still feels like a lump when I put my arm down. I guess I'll keep on with the exercises and see what happens. I keep my heart cushion pressed under there most of the time and that helps too. Just hope my arm movement is enough for the CT scan tomorrow.
JacB - good to hear that your seroma went eventually, although not great about the scar reopening. Nothing is ever straight forward is it.
Meesh73 - your post made me smile... I imagined sticking to the fridges in the supermarket with my knicker magnet.. I haven't read any very convincing posts about it helping but worth a try sometimes I guess. I haven't got the Tamoxifen yet as need to get to GPs to pick it up. Do you take yours in the morning or evening? Any ideas for whats best?
CDC - how did the chemo go, hope you are fairing ok this time round.
KTK - how are the rads going?
I've got CT scan tomorrow and rads planning, looking foward to getting this bit started, but actually after the euphoria of gettting good news on Thursday I've felt a bit down really, it seems its up and downs all the way doesn't it? Just now feels like another huge hill to climb and then the unknown after that?
RedRose - how are the nails? I'm going to remove my nail varnish and see whats what with mine, they keep breaking very short so not exactly attractive at the moment!
Hi Kip, Shi asked me to pop on here and let you know about the magnets. I've been wearing mine for months and I don't think it makes any difference but I'm still wearing it in case it's making even a tiny bit of difference 😂 I do find I sometimes get stuck to metal things if I'm not careful (like my work pass or handbag) 🙄 I tried acupuncture first but that didn't do anything either and I'm now taking sage tablets to no avail. That's not to say that none of those things would work for you. The best things I have to deal with the flushes are foldable fans (I have a few in different bags) and the cool pillow and they were also the cheapest 😂
Good luck with the rads, they're nowhere near as bad as the chemo 😊
That explains a few things..... my left breast and connecting bit to my arm is what is so enlarged - was so much bigger that I didn't fit into my clothes, but I think it has reduced a bit now as I said before.
I mentioned this to my oncologist last week, and she advised the same as you, about the gentle pressure, but didn't want to have a look at it. I was concerned that it might be breast lymphoedema, but I have radiotherapy planning next week, where I hope that might be ruled out. Its good to be able to chat through things on here isn't it, and to swap experiences as and when we need to. I'm sat here doing a bit of 'gentle pressure' liquid pushing out as I type with the other hand!.... I will also try to dig out the exercise sheet with the details as well.
I found it interesting that your team had been similar to mine about the seroma business.....
I was told that I would likely have a seroma, but that I shouldn't worry, because the nurses or the surgeon would drain it after the surgery. My particular surgeon does not even use a drain on anyone, but I was reassured when they told me they would drain anything that popped up.
So I called and made an appointment for this with BC nurse when a swelling began, and she said she could not drain much, and to wait to see the surgeon, which I did, and then he said that it would disappear on its own over time, and that he did not want to introduce another opportunity for infection by draining it. So I never had anything drained, and this was in June! I think it may have reduced slightly, but I'm not sure it's going to go away completely. The affected breast is now at least 2 cup sizes bigger than the other side! My op was a full node clearance plus lumpectomy. I know we are all different, but has anyone else had this?
Oh thanks for the heads up on the exercises, makes sense I guess... mental note to self... do the exercises!
Hope you get some answers regarding the complaint.